Sunday, May 26, 2013

We love going to pick-your-own fruit and vegetable farms! We've been to this orchard several times. This was supposed to be my Mother's Day celebration trip, but I got very very sick Mother's day weekend. So, we decided to go today.

on our way

The day was just about perfect--not too cold, not too hot, and still some berries left! Elena spent very little time on her knees while picking berries this year. Unlike last year, she walked while she looked for berries, and even did some picking while on her feet (using one crutch).

Elena on the berry hunt

Vivian did better this year too. Last year she ate every one she picked. She actually got some berries in the box--10, to be exact. Jason and I discovered that kids can get "jacked up" on strawberries.

Another one not in the box

Berry Haul

I tried to make strawberry jam. I'm not sure how it is going to work out, but I had some great helpers.

Saturday, May 25, 2013

Yesterday, my brother got married!
Elena and Vivian were asked to be flower girls--they were SO EXCITED! A few months ago Andy and Melissa brought down their flower girl dresses--Vivian has asked almost every day if she could wear it to school. They could not wait for the wedding!

I had a few concerns. If you have a child with CP like Elena, you know what I mean. Will I find appropriate shoes that will stay on? Will she be able to carry a flower basket? Will she fall? What is the terrain like (is there a fabric runner, or is it on grass)? Will she need to stand for a long while? My most immediate issue was what will I do with her crutches? As you can see, they are hot pink. Not traditional wedding appropriate.

I brainstormed for a long time in my head. I settled on using ribbon. I figured it wouldn't fray, and I'd twist it around or make a "tube" with it and hand sew it. I settled on wired wide white ribbon, just to see if it would take shape. It did, sort of. But it was thin, so the hot pink still showed through.
I ended up using double-sided hem tape--LOTS of it. First I'd tape the crutches, then I twisted the first layer of ribbon around them. I put on more tape, and wrapped another layer. The crutches sort of looked mummified. I then sewed double-ply fabric flower trim around the crutch joints (where the ribbon wouldn't take), wrecking a whole lot of needles in the process because they ended up being coated with the layers of hem tape underneath. Still, overall, I was pleased with the look--with the exception of the dirty arm cuffs, but I forgot all about planning for that. Now all I needed was for her to keep these white crutches CLEAN for two days (day of the rehearsal and the wedding). WHICH SHE DIDN'T, b/c she got them all dirty at recess--she left them on the ground and kids (including her) walked on them while catching cicadas. A little laundry detergent and water saved the day (WHEW).

you get the idea

As for shoes, I wanted a thick-soled white mary jane flat that had LOTS of buckles and/or straps to try to keep the shoe over her sure step AFOs. That didn't really exist, so I settled on a very low heel (since she was on her toes anyway, her gait didn't look too bad) and one strong (but thin) strap. There wasn't much to choose from. I considered trying to get her orthotist to alter the heel of her shoes (since she has a leg length discrepancy, and we do this for her regular shoes) but I didn't have time. Elena's foot came out of her shoe a few times, but after we strapped it REALLY tight (it didn't hurt her foot b/c of her AFO) it seemed to be set.

The terrain was outside (gulp). The procession was down an old, uneven, sometimes crumbling brick walkway (double gulp). It was relatively flat, but problematic for Elena if she wasn't paying attention. She knew she was supposed to smile and look forward as much as possible, while staying safe--she knew the walkway could be trouble.

Neither Elena nor Vivian carried a flower basket (we had been practicing carrying a basket on her crutch and using the hand to throw things out of it). Melissa decided the girls would wear flower crowns on their heads instead of throwing petals--I was actually quite happy about that, given the brick walkway.

Everything seemed in order. The rehearsal went well, but it was hot--SUPER HOT AND HUMID. E seemed comfortable with the flower girl duties, but not the heat. Then it rained. Then it got cold.

REALLY COLD. It was 60 degrees and WINDY--compared to they day before, it was downright frigid. After breakfast that morning, we took the girls to Gravelly Point--a great place to get close to airplanes as they take off from the airport. It was pretty cool.

Fast and loud

Three airplanes

Then we all got ready for the ceremony--major excitement on Elena's part. Vivian was tired (I knew this might happen), so we packed a few snacks just in case.

Me and my girls

Dressed up beauties

I decided we'd take off the girls' sweaters (not part of the flower girl uniform) and they'd have to be cold for a few minutes. They ended up putting on their sweaters during the ceremony. No biggie.

Waiting patiently--this room was warm

The photographers requested no cameras at the ceremony--which makes sense, no one wants their wedding pictures to have photos of all their guests taking pictures with their phones! So I don't have shots of the actual ceremony. If I get any digital copies, I'll put them up here. Elena was AWESOME. Super great smile, walked slowly, didn't fall, and walked nice and tall. Just perfect! Vivian walked a little fast--but she was totally adorable, especially when she wanted to stand with the bridesmaids (she did, until she got too cold and she put on her sweater). Needless to say, the ceremony was beautiful, and I couldn't be happier for my brother and Melissa. They are a perfect match.

Heading to the reception!

At the reception, my camera ran out of battery life. The girls (especially Vivian) worked the room and talked to family and friends. They both loved the photo booth and seeing everyone all dressed up! I was hoping that they would last until the dancing started. I got one dance with Elena--she was extremely tired and I held her. Vivian was already asleep upstairs at that point. A few moments after our dance, Elena went up to join her. It was a very special day--but by that point, both girls were pretty exhausted. Jason put them to bed while I got to catch up with family and friends, which was great fun.

Congratulations Andy and Melissa! Thank you so much for allowing us to be a part of your big day!

Friday, May 17, 2013

I took the day off work and became a chaperone for Elena's second grade field trip. It started at the Safari Park (I had never been, but I asked about the terrain in advance), which was about 90 minute's drive from school.

The school rented a charter bus (with a bathroom--essential, and TV screens--this kids loved them) while the parents carpooled. Elena had a special support for her feet so they didn't dangle while she sat in the bus seat. She said she loved the bus.

I brought her wheelchair b/c the Safari park huge. There is a paved animal area, where there were creatures of all types in good sized pens. Monkeys, tortoises, farm animals, tigers, cheetahs, flamingos, servals, kangaroos--just all sorts of animals! Elena decided to go on foot. She wasn't as fast as the rest of her classmates, but kids were all over the place (in groups) and everyone was enjoying themselves.

E and Mom are Llamas

The second part of the Safari park was on a tractor ride. Each person got a bucket of feed, and we could feed animals that approached us. They were all pretty easy going (still dangerous due to size/teeth/horns/antlers) and we all loved it! We are absolutely coming back so Jason and Vivian can have this experience!

E feeds a friendly Bison

Ostrich eggs are HUGE!

After the ride we all ate lunch and headed to our next destination--Natural Bridge.

E points out the attraction

Gorgeous

Elena took a shuttle bus to the bottom of the Natural Bridge, meeting her classmates that had descended a lot of rocky steps. Everyone then walked up to the Monacan Indian village display* and we had a fascinating discussion featuring Monacan Indians, and natural resources. During the discussion, I offered my knee as a place for Elena to rest--she was very very tired, and looked like she might fall over (it was also pretty warm all day). She wanted to walk the way back herself, but we were far behind and she looked unstable. I gave her a piggyback for part of the way back--I thought she was going to fall asleep on me!

When we got back to the Natural Bridge, she walked again--the rest of the way to the shuttle bus.

Natural Wonders

I'm so proud of E. She had lots of energy, her stamina was great, and she didn't have any bad falls. Overall she stayed close to her group of peers, lagging just a teeny bit behind. Her class is pretty awesome. I got a great picture of them under the bridge--a great group of kids, all of them.

*One of the tour guides stopped me as I was leaving the village display to tell me "he had crutches just like Elena" when he was young. He is 42, and has arthritis.

Elena had her regular checkup with her orthopaedic doctor a few weeks ago. Overall he was pleased with her progress. He thinks that her flexibility is decent (maybe the night splints are helping?), her range of motion is pretty good, and he is glad she is an active, happy kid.

He looked at her spine, and quickly looked at her arm strength/core (hold arms straight and out, several directions, in a sitting position--check; hold arms straight above head in streamline position--almost check; and he unsuccessfully tried to tip her over--check) and was pleased.

Then we got into a discussion about hips. I brought it up--basically, I use these visits to try to prepare myself for any future surgeries/interventions as best I can. I don't like the "bad surprise", when you show up at the ortho and all of the sudden you've been told that your kid needs XYZ surgery or else something terrible is going to happen. So, I'd rather hear WAY in advance, in order to try to prepare myself and Elena.

I already knew that she was at higher risk for scoliosis (she's fine so far). I also know that she may have hip issues due to her spasticity/crouch. She hadn't had a hip x-ray since age three (before her SDR). So, they decided it was about time she got one.

I don't know a lot about hips, but here goes...

At E's 3rd year X-ray, she didn't have much of an established hip ball-and-socket joint. As kids grow and bear weight (and walk), the femur head angles itself into position into the hip, and carves out a socket (something like that). Due to E's delayed mobility, her hip at age 3 didn't look much like a ball-and-socket. Kids with SDCP like Elena (knees caving in, tibial and femoral anteversion) don't develop the right femur head angle and the socket tends to be shallow (imagine what W-sitting does to a hip joint). This results in something called coxa valga.

http://en.wikipedia.org/wiki/Hip

If the socket is shallow enough and the spasticity tight enough, the femur head can wear away cartilage at the joint and even come out (subluxation). This can be, but is not always, painful. The most common surgical fix for this is a hip osteotomy (which wasn't as terrible as I had thought it was) where they remove a small triangular piece from the stem of the femur head and make the angle of the femur head more acute so it fits/stays better in the socket. This is better for stability, but as with any surgery, there is a net increase in weakness due to cutting through the tissue and bone.

It was my understanding that kids who move like Elena (pretty well, but not great) didn't get hip subluxation and didn't need the hip osteotomy. That is not true. We'll have to wait and see if Elena complains of hip or leg pain and then see what's going on (at this time, she does not have pain). The best thing we can do is try to keep her posture as close to normal as possible and keep her active (bearing weight as close to properly as possible). I think we are doing that.

I asked if there was the possibility at this point in her life (a small age 8) that with proper exercise/training, we could deepen her hip socket over time. He said that is unlikely. Overall he thinks her hips look better than he had originally expected--she may not need any intervention at all. That sure would be nice, right?

He did say it was almost a given that with her hip joint the way it is, she would develop early arthritis of the hip (early being ~50 years of age). That made me sad...but I can't do anything about it.

The good news is E is moving well and still making gains. Her doctor doesn't want to surgically intervene for fear of making things worse. Wait and see is the plan, and right now, that sounds pretty sweet.

Wednesday, May 1, 2013

Elena chose the theme "sports" as her birthday party this year. I morphed this into "games"--so we played 8 silly games, "minute-to-win-it" style. We decided to invite her entire 2nd grade class, as well as a few neighbors. I expected a packed house.

I am waiting to post pictures until/if I have permission from parents, so a description will have to do for now.

E's party guests arrived, and she asked them to pick an egg from the bowl. Inside was the color pink, purple, or orange (Elena's favorite colors)--corresponding to the Team color. Each kid wore a hat for their color team. Each team would earn points for each game. The winning team got a special choice at the end of the party.

1--Dizzy Izzy
The weather wasn't cooperating, but I decided to try anyway. This game is a relay race, where each person runs to a bat, then spins around it 8 times with one end of the bat on the ground and their forehead on the other end of the bat. Then they run back (not necessarily in a straight line) to tag their teammate to take their turn. First team finished wins. For this game, E had to run around the bat instead of putting her forehead on it. No biggie.

2--Kid Outburst
I thought of 10 items in a category, and each team had one minute to try to guess all ten items. Categories were things like "pizza toppings", "types of soda", "vehicles", stuff like that.

3. Rump Shaker
I made LOTS of boxes out of cardboard, and used duct tape to secure the box on each kids' backside. Inside each box were 4 ping pong balls, labeled with the corresponding team color. The kids had one minute to try to dance/shake/jump their balls out of the box. Each team got one point for each ball that ended up on the floor.

4. Nuts and Bolts
I had three trays with lots of nuts and bolts of different sizes (they all had a match). The teams had one minute to match them all.

5. Can Sorting
I put increasing amounts of money (coins) in 8 different (empty) soda cans. Each team had to sort them by value according to weight. This was probably their least favorite game--it was pretty difficult.

6. Volcano
Each kid got a roll of mentos. Working as a team, they had to drop a mento into an open bottle of diet coke sitting on the ground. Kids had to stand up, and drop the mento from head-level. As time went on, they could get progressively closer to the bottle, but could also end up with a facefull of diet coke.

7. Grapevine
I had strung grapes on one end of a thin string, and attached them to a long PVC pipe using duct tape. With the team lined up in a row, I positioned the string of for each grape so that it could reach the mouth of each kid while they were standing in place. Each kid had to blow their grape (pendulum-style) and then catch it in their mouths.

8. Spaghetti relay
Each kid got a piece of spaghetti. They had to walk to a table, maneuver a piece of rigatoni onto their spaghetti, and walk back to tag their teammate--all without using their hands. This proved pretty difficult for everyone, but there were lots of laughs and helping by the adults at the table.

The winner of the Octothon was Elena's team (Team Orange) by ONE POINT! The winning team's reward was they got to pick one of the day's games for the grown-ups at the party to play. Of course they picked Rump Shaker, so all us adults had to do it!

Thanks to all the kids--great sports, all of them--and especially to both sets of E's grandparents who helped with the party. And a big thank-you to all the grown-ups who played the final game!

My dearest Elena,

I can't believe you are eight years old now! You are a wonderful big sister, a good student at school, and a great friend. Even when times are challenging, you have the maturity to think things through, talk out problems, and try a fresh approach. You are diligent with your therapies and have more independence than ever. We love your funny stories and silly ideas. Vivian loves you to pieces. You are the hardest working kid I know.
You've had a few Disability Awakenings this past year, which I'm sure can be an unhappy reality check. Even so, you have a strong sense of self, something of which your Daddy and I are really proud. You are an amazing, intelligent, thoughtful, and inspiring girl. We love you always, in all ways. I'm so thankful I get to be your mom.

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Mission Statement

No one plans, or expects, to have a child with a disability. When this happened to us, we started a desperate search to find information relating to milestones or expectations for our daughter after her diagnosis. Most of this was fruitless. My hope is for this site to help any person or parent in a situation similar to ours.

About Me

I'm a work-hard, play-hard multitasking wife and mother of two. I'm lucky to have a supportive family and friends, and live in a great town for children with (and without) disabililties. Elena is my firstborn, born at 33w with moderate spastic diplegia. Vivian is my secondborn--almost at 28w, but with a lot of help, made it to 38 1/2w and developing normally; she was diagnosed with focal epilepsy at age 9.